Pages

Sunday, 23 February 2014

Life Before Transplant

Cystic Fibrosis is a genetic disease which affects mainly the lungs and pancreas. Basically the mutation I have (yes, I'm a mutant) makes me produce a thick sticky mucous (lovely). This builds up in the lungs making it a 5 star hotel for horrible bugs like Staphylococcus and Pseudomonas which cause AWFUL infections. These constant infects severely damage the lungs more and more until they finally can not function any longer. It also blocks up the pancreas ducts so it can't produce enzymes which digest your food. Eventually it also make the pancreas less efficient at producing insulin and so most people with Cystic Fibrosis end up being diabetic.

Treatment varies from patient to patient depending on the severity of their condition. I'm going to tell you a little bit about the treatment I used to receive.

First off, living in Zimbabwe isn't ideal if you have a health condition. I had to fly up to South Africa every month for check-ups, treatment and to get medication. Treatment consisted of staying in hospital for two weeks of I.V antibiotics every 3 months. As a little girl I had a lot of terrible experiences with this, nurses poking and prodding me with needles, holding me down while they tried to find a vein. Medication doses were sometimes given too strong which burnt my veins and was extremely painful. This kind of trauma left me very needle phobic and untrusting. During my transplant this was my biggest obstacle, much to everyone's disbelief. I was cut in half, had many awful procedures, stayed in hospital for 3 months and was in a lot of pain but having my blood drawn every day was and still is so mentally difficult for me. It's amazing how our thinking changes after trauma.

As well as these admissions I also did home treatment which included nebbing every morning and every night. A nebuliser is a machine that converts various medications into mist so it can be inhaled into the lungs. This took me about 2 hours every day. After nebbing I would do physio which consisted of breathing exercises designed to make me cough up all the infected mucous (it wasn't pretty). This was VERY exhausting but the only thing that would give me a bit of relief to help my breathing.

Due to my pancreas not producing enzymes I have to take artificial enzymes every time I eat, it adds up to nearly 20 pills a day. These enzymes are not as efficient as the ones your body would normally make which means my food is not absorbed properly and I have to eat A LOT in order to maintain weight. I also have to take daily vitamins A,D,E,K, iron and calcium as these are very poorly absorbed. On top of this I have always had food supplement drinks, like protein shakes to try and help my weight. Despite all of this I still struggle with my weight and eventually I had to have a feeding tube surgically inserted so that I could be tube fed throughout the night. So to those people who say, "you're so lucky you can't get fat", think again about how 'lucky' I really am ;)

I am diabetic so require insulin anytime I eat any carbohydrates. This is why I have recently started Paleo, to try and cut down the amount of insulin I have to inject.

Reading about organ donation awareness
a few days before my transplant.

Later, when my lung function deteriorated to under 20% I had to use oxygen 24 hours a day. I couldn't even wash my face without my oxygen on as I literally could not breathe. My mom had to move down to Johannesburg to look after me full time as most days I barely had the energy to get out of bed. As my lungs got worse and worse so did the pain. At one stage I started coughing up blood. For about 10 mins I was hunched over a bucket with blood pouring out of my mouth from my chest. Barely breathing and weak I didn't want to go through the stress of calling an ambulance so I went to bed and my mom took me to hospital the next day. This was just one of the many reminders I had of just how close I was to death.

There is so much more I could tell you about, like how I was nauseous every single day and threw up all the time. Or that my chest was so painful and I coughed so much that I hardly got any sleep at night. Cystic Fibrosis is a disease not even the Hitler's of the world deserve to have. There is no cure and treatments are extremely expensive so not everyone has the luxury to receive the basic care they need. However, when life gives you lemons, you make lemonade and that's exactly what I have always done. (sugar free lemonade of course ;)

Being raised by amazing parents I never let any of this get to me. Yes, I got scared, unhappy and desperate but I always had hope that new lungs were around the corner and I just had to be strong a little longer.

4 comments
:

Fawn you are absolutely amazing & your entire outlook on life humbles me! The fact that you've gone through so much & you kept your head held high through it all, always smiling, makes you my new personal hero! You are an inspiration to us all! Much love & respect!

I will never forget how brave you were as a little girl, Fawn and I particularly remember your sunny smile! It was always there. You seemed to get the most out of every day, no matter what. You are a very special young lady, and I am delighted that you can, at last, have a more normal life. You deserve every minute of it! Much love to you and your family as always.